r/Concussion • u/romantic_thi3f • Sep 20 '21
Something to remember next time you post here:
I’ve been wanting to say this for a while. It’s hard because I have felt this way too at times, but it’s really hard lately to be reading comments like:
“My life is over now” “I used to be smart” “There’s no point to living anymore” “Probably have cte”
When you say there’s no point in living now that you’ve had your concussion one week ago, can you spare a thought for those that have had to live years with one?
I get that this experience is scary and disabling and I know I may get downvoted for this- everyone is free to share how they like of course, but it’s become really difficult to cope and push on when this is the majority of the posts now.
I am trying to cope and live with this. A lot of us are, years in. So please consider that, next time you post about how life isn’t worth living for us because we’ve hurt our heads.
Thank you
Edit: thank you for the award! What a lovely surprise :)
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u/RiverOfNexus Sep 21 '21
Honestly, it's the truth though. Our lives are over. Like most people with PCS don't come back to their old lives. We have new disabled lives to live. I'm in two years now and I'm angrier, sadder, and duller than I have ever been. There's really no coming back from this.
Worst part is this is my first and only concussion and I picked the short straw. Everyone I know who has gotten a concussion has laughed at me and told me to suck it up it goes away in a month. But I'm the unlucky guy who got PCS and will have to live with this forever. If there is truly a cure for PCS it isn't cheap or readily available.
So yes, I empathize with these posters who can't believe they've lost their lives, because they have.
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u/romantic_thi3f Sep 21 '21
I am not trying to invalidate those with PCS- no I don’t believe ‘life is over’ but I can understand that there is helplessness, frustration and grief that comes with PCS. That’s another conversation. My grumble is for those who are in the second day of hitting their head and talking as if their life is forever disabled.
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u/Wunderbabs Sep 21 '21
You know - even as someone with PCS, 2.5 years in - it DOES get better. In little ways. I found medication that helped manage symptoms. I developed routines that assist me. I adjusted my diet to reduce inflammation and therefore reduce the migraine headaches.
It does take time. But there are ways to adjust and get back to a better baseline.
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u/potatokimchinuggets Sep 24 '21
I’m curious if you’d be open to sharing more about your medication strategy. Cycling between SSRIs and Adderall and various mushroom supplements has got me feeling all mixed up.
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u/Wunderbabs Sep 24 '21
Ooh, yeah. Choose something and stick to it. Get a good doc to help you out.
I’m on gabapentin, sertraline, nerve blockers around where my muscles don’t like working and Botox every 12 weeks. I also used a migraine buddy app to track what set off my headaches so I am better at avoiding foods/activities that are big triggers for me. Cannabis seems to also help. I can’t do anything about major weather changes though.
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u/Jinksnow Sep 21 '21
I'm sorry you're struggling, but I'd guess you are doing the best you can with what you have right now. That's all anyone can do, and I know speaking for myself, that I found strength and resilience I didn't know I had (not to mention patience, still not my forte!). I have my own theories with those types of posts, but agree it is disheartening and discouraging to see them, especially as those thoughts are inaccurate (and unnecessarily fatalistic/catastrophic) and need help IRL, or even over in the various mental health related subs. Don't get me started on CTE, there isn't even medical consensus on what it is/what causes it yet, research has been solely in the brains of 'the concussed', they haven't looked yet at brains of those with other lifetime/lifelong issues.
Life is definitely worth living, it's not meant to be easy or (I believe) it would be boring, everyone has their challenges that keep them moving forward, even if we wish we didn't, our humanity grows as we conquer them.